Monday, July 6, 2015

Cicily just upgraded to the latest hearing aid model - the Baha 5. Can you tell she likes it!?! In the previous post we had the pic of her holding my phone up to her hearing aid to listen to music. With the Baha 5 she can stream it straight into her hearing aid!!! It's bluetooth compatible and I have an app to control it on my phone. She's been LOVING music and now she can listen to it with great sound quality anytime! I even turned on some kids hymns while she was in church on Sunday and she got a good laugh out of it.

There's also a microphone feature. I can push a link on my phone and speak into it and it streams straight to her hearing aids. Cicily and her sisters have been playing around with this one! Maya or Sophie will go into another room and say a secret word into the phone and then come back in and ask Cicily what the secret word is. At church I stood outside her class and talked to her. Lots of fun times being had with these new hearing aids!

Thursday, July 2, 2015

"It's normal after this pose to feel emotional"
said the instructor. "Uh that's a
relief because tears just popped out of my eyes," I thought. I was skeptical that a yoga pose could elicit
such an immediate emotional response, yet the proof was in the tears trickling
down my face. I hadn't even realized I
was sad at the time. But reality was I'd
been sad every day for the past 2 years, since my daughter Cicily was diagnosed
with a terminal brain disorder. This was
just my 2nd Bikram Yoga class and after the tears in camel pose I knew this
yoga was something I should have in my life.
I had felt spiritual peace in my life but never knew my body was in need
of physical peace. For the past 2 years
practicing Bikram Yoga has allowed my body to let go of pent-up emotions and
feel physical peace.

Practicing also keeps my back from hurting so I am able to
physically care for my daughter. And in
turn Cicily is my inspiration in class.
When I feel like I can't hold a pose another second, I think of her
persistence and it gives me strength.

Sunday, June 28, 2015

Utah for Spring break. Barfing and diarrhea didn't stop Cicily from having a good time! A fave for Cis was playing in the snow. She always laughs biggest just playing with her family!!!

Cicily was spinning and swinging on this swing at the park for literally an hour! Anyone know how we can get one for home use?!?!

Nothing better than a lap full of chicks and ducklings for this girl!

Cicily's new friend, Nurse Joy!

Sophie and Mom got to go on the 2nd grade field trip with Cicily to Butterfly Wonderland.

2nd grade end of year performance.

Lots of museums for this family.

Favorite pastime of late - holding Mom's phone and listening to music!

Playing arcade games with Grandma and Grandpa at a HopeKids event!!

Cicily always wants to push the cart when we're out. So I've been taking her by myself lately when we only need a few things. We make an awkward, silly train! If we've made your shopping trip inconvenient, sorry we're too busy enjoying life to care. :)

When we received Cicily's degenerative/terminal diagnosis 4 years ago, we had a 45 minute talk with her neurologist (yes she was amazing and we are heartbroken she died before Cicily). Dr. Sweetnam described that Cicily's life would either go one of two ways: she'd get too sick to recover and die; or she would continue on a path of degeneration where her body lost function and she'd slowly die.
Chris and I discussed this at length and both felt that clearly her body would take the shorter path for many reasons. She'd always been so sick as a baby and young girl. We know her love for life and being able to live it up as much as she can. It sounded easier than the alternative.
The alternative, as I wrote in January 2011, "Or, her body will slowly lose more and more function. This would mean she'd gradually lose the ability to crawl (which is somewhat happening), sign (also happening), sit, hold up her head, digest food, and so on, and ultimately breathe. As the doctor put it, she'd at some point "stop being Cicily". I hate that phrase. I can't imagine her living too long without being able to smile, laugh and enjoy life with us. "She's been so healthy over the past year compared to early on in her life, that we're starting to realize we're on the longer path. So rather than expecting every severe pneumonia to be her last, we're looking at long road implications. And at the top of that list is, how do we continue to help Cicily be as happy as she can and get every bit of joy out of her life.

I last did a detailed update of Cicily 2 years ago.
http://cicilyspage.blogspot.com/2013/04/update-how-is-cicily-doing.html
So it's probably time to do another.

Cognitively: Cicily completed 2nd grade this year and is now (thanks to her brilliant school nurse) multiplying, doing fractions, reading grade appropriate texts, answering grade appropriate comprehension questions. Pretty much right on track for her age. It's just taking more patience to figure out all the amazing things she knows and can figure out.

Fine motor (hand control): Cicily cannot manipulate toys at all anymore. Her hands stay very tight in fisted balls most of the time. She likes to put toys in and out of containers because it's something she can actually still do with her hands.

Gross motor (sitting, rolling, etc): Cis can't sit up anymore at all. She can roll over but it takes a great deal of effort. She can't bear her own weight - her feet are always moving up and down if were were to attempt to hold her up and assist her in stepping.

Respiratory: Best winter yet! So odd. She probably only needed her mega antibiotic 2-3 times this year instead of 8-10. We think she's just older and not as susceptible to common little kid illnesses. Just like most 8 year olds!

Communication: Cicily signs about 5 signs consistently, but prefers not to go to the hard work of signing unless necessary. Her most important things: family members and books. She still says, "yeah", though it's less exuberant usually. She still makes a fantastic no face and a beautiful smile for yes. But the wait time it takes for you to ask her a question and then for her to respond appropriately is getting MUCH longer. It takes 10 or more seconds to get a good response.

Digestion: She's been vomiting randomly for many months and we're not sure why. I suspect it's just her soft muscles growing weaker.

Overall: Cicily has been taking medication (Artane) for over a year now to help with her rigid movements. It's very helpful in allowing her body to bend at the waist. She still moves constantly and always has bruises on her arms and legs because although she can't move accurately, it doesn't stop her from trying and experiencing life.

Emotional: Chris and I have noticed Cicily is not as happy as she used to be. If you've read above you can appreciate why that may be. But she manages to smile far more than cry. Yes, she's amazing.

Tuesday, January 20, 2015

Cicily Anne Watkins was baptized a member of the Church of Jesus Christ of Latter-day Saints and given the gift of the Holy Ghost by her Dad on October 3, 2014. Her Grandpas were official witnesses of her baptism and many of her family and best friends were also there to witness this special event in her life.

When Cicily woke up the next day we were talking about her baptism and birthday party. She said it was the best day of her life! She was in heaven getting to spend time with all of her most favorite people in the world!

Her favorite nurses/best friends were there!

So many friends made lots of yummy treats for everyone to enjoy. Thank you very much sweet friends.

Cicily's friend and bus-mate Caleb came to celebrate!

Aunt Kristine and Clint and Landon joined us.

Our besties the GGs. Cicily loves these girls! They always take time to say hello and talk to her.

Aulton and his family came. Cicily and Aulton have been special friends since Cis was born! Aulton wanted to sit on her lap tonight.

In addition to treats, we also had balloons to keep all the little friends happy!

Grandpa Courtney and Grandma DeEtte

Grandpa Norm and Grandma Sue

A big hug from and for Sister Sparhawk!! I'm sure there was a handshake before or after too.

Cicily loves handshakes!

Cousins!! The Snell Family (Minus Uncle Heath and Cade who made plans before they knew about the big day.) Cicily enjoys playing with all of these guys and talking about her outfits with them! Cicily and Kobe even made up a great game - trach vent soccer!

The Snell Family! Uncle Adam and Aunt Fabiane traveled from Las Vegas just for Cicily's baptism. Aunt Fabi gave a beautiful talk about baptism just for Cicily. I love that Cis is giving her a hug in this picture!

Ashby Family!

Thanks to all of Cicily's family and friends who could make it to her baptism and birthday celebration. She really enjoyed her night a lot, as you can see!

It was a perfectly beautiful night for me. I had spent the previous 2 years thinking about and planning her funeral. It was so lovely to plan a night all about Cicily that so many of her favorite people could come to and enjoy together. It was much nicer to celebrate her life on a night when she could be there to participate! I'm so happy for her that she could make covenants with her Heavenly Father and now have the Holy Spirit as her constant companion.

New to Cicily's blog? Read some FAQs about Cicily:

Cicily at 8 years old

About Cicily

Cicily has degenerative hypomyelination (leukodystrophy) - no white matter coating her brain, which is terminal. For Cicily, this means she has limited motor control and "shakey" movements. It does not affect Cicily's cognitive abilities, as she communicates and learns at a standard level for her age.

Cicily also has Treacher Collins Syndrome. For Cicily this basically means she was born with a cleft palate, small lower jaw, small ears, and no ear canals.

Cis is such a tough girl though, and she's so easy going. She handles all of her difficulties so well. She's certainly up for her challenges! She continues to be a medical mystery and a joyful girl.